In Autism by the numbers Newsday offers a reality based perspective on the autism crisis facing families and governments in the United States today and the need to establish regional autism prevalence in order to allocate resources appropriately. The opinion article points to the lack of funding and implementation of the US Combating Autism Act , the lack of standard reporting requirements for schools and pediatricians, the slow pace of movement by the CDC and lack of coordination by various levels of government for the failure to establish regional autism rates.
The call by Newsday for action, for detailed epidemiological studies, to establish regional rates is based on two premises: (1) Autism is a serious disorder with an enormous impact on families and (2) Autism diagnoses, for whatever reason, are increasing at an alarming rate.
Autism is a lifelong heartbreak for parents of children diagnosed with the puzzling disorder, whose incidence is growing at alarming rates.
Not only does it mean years of exhausting care to manage behavioral aberrations that make everyday functioning for their children difficult at best, dangerous at worst. But it also means constant worries by parents that, after they're gone, their adult children may fall through the cracks of a system badly equipped to serve their many needs.
And those needs are growing rapidly. Once reported as a rare disorder, autism now affects one in every 150 children in the United States, according to the latest available studies conducted by the federal Centers for Disease Control and Prevention.
...
Regardless of cause, evidence that a growing number of children are being diagnosed as autistic is everywhere. Agencies on Long Island that provide social, educational and training services for children and adults with autism can't keep up with the growing demand. Residential facilities in Nassau and Suffolk report waiting lists ranging from two to five years.
Sunday, August 26, 2007
Saturday, August 25, 2007
Autism Zeroes - Illinois Governor Rod Blagojevich
Illinois, Affordable Health Care For All, Except those with Autism.
I do not pretend to fully understand the complexities of the American political system let alone the mysteries of Illinois politics but I am genuinely perplexed by the actions of Illinois Governor Rod Blagojevich. The Governor, who purportedly is calling for more health care services for his state, exercised his line item veto power to cut hundreds of millions from the state budget including money for the Easter Seals programs of Peoria and Bloomington which provide health care services for 16,000 families. As reported by Central Illinois Proud.com these programs were told by the Illinois Senate and House they would receive $10,000,000 for services; an amount which the Easter Seals people did not consider adequate but which the Governor still cut in half.
What was not cut from the budget? According to the Chicago Tribune:* $15 million for salaries of Blagojevich, state lawmakers and other officeholders, which includes a 3.5 percent pay raise that comes on top of a 9.6 percent raise approved last week. The governor's salary now moves to $171,000.
The Tribune also points out that the projects of members of a key legislative committee with power over the governor's planned expansion of health care services were not cut:
'Curry favor'?
Left intact were projects sought by Republican and Democratic members of the Joint Committee on Administrative Rules, a little-known legislative panel that could decide whether the governor gets to expand health care. Many observers interpreted the move by the governor as a bid to buy votes from long-standing Senate Republican and House Democratic critics who sit on the panel.
I do not have knowledge of the intricacies of Illinois politics but the matter of health care services for autistic persons and their families does not seem to be high on the list of priorities of Illinois Governor, and Autism Zero, Rod Blagojevich.Friday, August 24, 2007
Autism Abuse in Iowa, What We've Got Here Is A Failure To Communicate
"What we've got here is failure to communicate."
— spoken by "The Captain", played by Strother Martin , Cool Hand Luke
"What we've got here is a failure to communicate."
— spoken by "Luke", played by Paul Newman, Cool Hand Luke
In School Leader Defends Time Out the Des Moines Register reports on the explanation offered by the superintendent of the Waukee school district for the placement of an autistic school child in a "time out" room for more than three hours, even after she wet herself and even after she had struggled to obey the rules so that she could be let out. The superintendent states that the district will not change its policies concerning time out use, urges parents to be more involved in their children's schooling (implicitly blame the parents), and points out that some children want to go to time out. It is clear from the superintendent's explanation that he has missed the point of the reaction to his district's treatment of this autistic child.
"I wanted to reassure our parents that their children are going to be looked out for and cared for in the most appropriate way," he said Wednesday. "I think the article gave the impression we're taking kids willy-nilly down to these timeout rooms, and that's not the case and certainly never has been."
...
"Your child WILL NOT utilize a timeout room without your prior permission nor without you having the opportunity to view the timeout room," he wrote in the letter to parents.
The superintendent fails to understand that it is not the use of a time out room with an autistic child per se that created the outrage in this instance. It is leaving the child in the room for such a long period of time even after she has wet herself and even after she has struggled to comply with the rules. That is what was wrong in this case, it is HOW the time out room was used that was offensive in this case.
The superintendent, if he is truly an educator, and the district, might educate themselves about autism. Some autistic children should not be "mainstreamed". I do not know this child's abilities or deficits and do not pretend to know whether she should be in a mainstream classroom on a full time basis. But where the Des Moines paper indicates that she has frequently been sent to time out it is possible that she is overwhelmed by her classroom environment and might function better in a quieter, more isolated environment. She could then be brought into the classroom for specific activities and for defined periods of time.
My profoundly autistic son was overwhelmed by his classroom environment and was biting his wrists each day at school. He was removed to a more isolated location and the biting stopped and his learning, with an aide, improved. He visits the classroom for socialization, for specific activities within his range of abilities and for defined periods of time. Some of his peers visit in his area as well to engage him in activities such as reading buddies.
I am not suggesting that what worked for my son would necessarily work for this child in Iowa. Each child's situation should be looked at on its facts. But repeated resort to a time out room, and use of the time out for more than 3 hours, even after a child has wet herself and has struggled to comply is wrong. And it tells me that whatever plan exists for this autistic child's education is not working. The district and parents should probably re-examine that plan and consult with autism knowledgeable professionals about a possible re-design.
The superintendent, unfortunately, seems more interested in proving that the district is right, and in maintaining the district's legal stance for their appeal, then in learning from this bad experience.
— spoken by "The Captain", played by Strother Martin , Cool Hand Luke
"What we've got here is a failure to communicate."
— spoken by "Luke", played by Paul Newman, Cool Hand Luke
In School Leader Defends Time Out the Des Moines Register reports on the explanation offered by the superintendent of the Waukee school district for the placement of an autistic school child in a "time out" room for more than three hours, even after she wet herself and even after she had struggled to obey the rules so that she could be let out. The superintendent states that the district will not change its policies concerning time out use, urges parents to be more involved in their children's schooling (implicitly blame the parents), and points out that some children want to go to time out. It is clear from the superintendent's explanation that he has missed the point of the reaction to his district's treatment of this autistic child.
"I wanted to reassure our parents that their children are going to be looked out for and cared for in the most appropriate way," he said Wednesday. "I think the article gave the impression we're taking kids willy-nilly down to these timeout rooms, and that's not the case and certainly never has been."
...
"Your child WILL NOT utilize a timeout room without your prior permission nor without you having the opportunity to view the timeout room," he wrote in the letter to parents.
The superintendent fails to understand that it is not the use of a time out room with an autistic child per se that created the outrage in this instance. It is leaving the child in the room for such a long period of time even after she has wet herself and even after she has struggled to comply with the rules. That is what was wrong in this case, it is HOW the time out room was used that was offensive in this case.
The superintendent, if he is truly an educator, and the district, might educate themselves about autism. Some autistic children should not be "mainstreamed". I do not know this child's abilities or deficits and do not pretend to know whether she should be in a mainstream classroom on a full time basis. But where the Des Moines paper indicates that she has frequently been sent to time out it is possible that she is overwhelmed by her classroom environment and might function better in a quieter, more isolated environment. She could then be brought into the classroom for specific activities and for defined periods of time.
My profoundly autistic son was overwhelmed by his classroom environment and was biting his wrists each day at school. He was removed to a more isolated location and the biting stopped and his learning, with an aide, improved. He visits the classroom for socialization, for specific activities within his range of abilities and for defined periods of time. Some of his peers visit in his area as well to engage him in activities such as reading buddies.
I am not suggesting that what worked for my son would necessarily work for this child in Iowa. Each child's situation should be looked at on its facts. But repeated resort to a time out room, and use of the time out for more than 3 hours, even after a child has wet herself and has struggled to comply is wrong. And it tells me that whatever plan exists for this autistic child's education is not working. The district and parents should probably re-examine that plan and consult with autism knowledgeable professionals about a possible re-design.
The superintendent, unfortunately, seems more interested in proving that the district is right, and in maintaining the district's legal stance for their appeal, then in learning from this bad experience.
Thursday, August 23, 2007
Laura Miller's Autism Reality - Single Mom, 3 Autistic Children
Autism is not just a topic for movies and internet essay writers. It is for many autistic persons and their families a daunting challenge. As the father of one boy with classic Autism Disorder and profound developmental delays the reality of autism is not something I can ignore. But the challenges I deal with are small beside those of Laura Miller a single mother of three children with "full blown" autism described in this portrait by Susan Reinhardt in the Asheville Citizen Times. Ms Reinhardt's article does a good job of presenting Laura Miller's autism realities and the spirit and strength of character she demonstrates in doing so.
The article ponders the odds of 1 mother having 3 autistic children. I don't know the answer to that question but I met a mother with 3 three autistic children a few years ago at a law school class reunion brunch which I attended with Conor. It was held in a large ballroom and there were a number of children present with lots of room to roam. The waitress at our table appeared to be looking persistently towards where Conor and I were seated and I couldn't figure out why. Conor was exceptionally well behaved that morning and I wasn't deluded enough to think she was looking at me for any specific reason. Eventually she approached us and asked me whether Conor was autistic. I was surprised with the question since Conor had done nothing to draw attention to us. She told me that she had three autistic children herself and thought that Conor might also be autistic. I was truly amazed at this mother of three autistic children waiting on tables and have great respect for her and parents in her situation . I thank Susan Reinhardt at the Asheville Citizen-Times for this feature on Laura Miller and her autism realities.
Heavy with fatigue, Laura spends the majority of the next few hours with Sarah, 11, because she can’t be alone for more than a few minutes. In another room, Andrew, 15, is whining and Anthony, 14, can’t take it. So he bites his arms and punches his head.
Laura weaves from child to child to child, this spinning cycle of tending one, then the other, until all that’s left of this mother is a blur.
The article ponders the odds of 1 mother having 3 autistic children. I don't know the answer to that question but I met a mother with 3 three autistic children a few years ago at a law school class reunion brunch which I attended with Conor. It was held in a large ballroom and there were a number of children present with lots of room to roam. The waitress at our table appeared to be looking persistently towards where Conor and I were seated and I couldn't figure out why. Conor was exceptionally well behaved that morning and I wasn't deluded enough to think she was looking at me for any specific reason. Eventually she approached us and asked me whether Conor was autistic. I was surprised with the question since Conor had done nothing to draw attention to us. She told me that she had three autistic children herself and thought that Conor might also be autistic. I was truly amazed at this mother of three autistic children waiting on tables and have great respect for her and parents in her situation . I thank Susan Reinhardt at the Asheville Citizen-Times for this feature on Laura Miller and her autism realities.
Wednesday, August 22, 2007
Study Finds Autistic Brain Cell Connectivity Deficiencies
In yet another advance in the Autism Knowledge Revolution researchers at Wake Forest University Baptist Medical Center have found deficiencies between brain cell connections within single regions of the brain. The Wake Forest researchers hopes this new information will lead to earlier diagnosis and more targeted medications.
Public release date: 22-Aug-2007
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Contact: Shannon Koontz
shkoontz@wfubmc.edu
336-716-2415
Wake Forest University Baptist Medical Center
Research may unlock mystery of autism's origin in the brain
WINSTON-SALEM, N.C. - In the first study of its kind, researchers have discovered that in autistic individuals, connections between brain cells may be deficient within single regions, and not just between regions, as was previously believed.
Tony Wilson, Ph.D., lead researcher and assistant professor of neurology at Wake Forest University School of Medicine, said he hopes this study will eventually lead to earlier diagnosis and more targeted medications for autism.
Using magnetoencephalography (MEG) brain imaging technology to measure brain electrical activity, the researchers administered a test called the 40 hertz (cycles per second) auditory steady-state response test. The test measures electromagnetic wave cycles and indicates brain cell discharges at the 40 hertz frequency.
'This test measures the brain's capacity to mimic what it's hearing. A healthy brain's cells will fire back at 40 hertz," said Wilson. "We chose this test because it is a robust metric of how well individual circuits are functioning."
The results were reported in this month's issue of Biological Psychiatry.
A group of 10 children and adolescents with autism, and 10 without autism, listened to a series of clicks occurring every 25 milliseconds (ms) for a duration of 500 ms. The MEG measured the brain's responses to these clicks.
In the right hemisphere of the brain, which controls attention and spatial processing, there was no significant difference in the groups. But the results showed a considerable discrepancy between the two groups in the left hemisphere, the area of the brain that controls language and logic.
In the auditory area of the left hemisphere, the group without autism delivered a brain response to the 40 hertz stimulation 200 ms after it began. However, the group with autism failed to respond entirely at the same 40 hertz frequency.
"Our results made sense. Both anecdotal and behavioral evidence suggest children with autism have significantly disturbed brain circuits on the local-level within an individual brain area," said Wilson. "For example, they tend to restrict their visual gaze to a part of someone's face, like a nose or an eye, but not the person's whole face."
The results also support previous research that showed disconnections between two or more brain regions, known as long-range connectivity. This new study supports the idea that the network as a whole is broken, but shows the disconnection in long-range connectivity may actually start within individual brain regions, known as local connectivity.
Wilson explains the difference between local and long-range connectivity using vision as an example. "With vision, one part of your brain identifies color, another perceives motion. Within each of these areas of your brain, there is local connectivity between brain cells that allow the region to do its job. When you see a red ball flying across the room, both of these areas of your brain start communicating with each other and put together flying and red as qualities of the same ball. That's long-range connectivity."
Wilson conducted the autism research while at the University of Colorado, but says he hopes to continue his autism research at Wake Forest.
"I chose Wake Forest because it has one of the most advanced MEGs in the country. Here, we can study the brain at a very precise level," said Wilson.
###
Co-authors on this study were Donald Rojas, Ph.D., Martin Reite, M.D., and Peter Teale, M.S.E.E., with University of Colorado, and Sally Rogers, Ph.D., with University of California-Davis.
Media Relations Contacts: Shannon Koontz, shkoontz@wfubmc.edu, or Karen Richardson, krchrdsn@wfubmc.edu, at (336) 716-4587.
Wake Forest University Baptist Medical Center is an academic health system comprised of North Carolina Baptist Hospital and Wake Forest University Health Sciences, which operates the university's School of Medicine. U.S. News & World Report ranks Wake Forest University School of Medicine 18th in primary care and 44th in research among the nation's medical schools. It ranks 35th in research funding by the National Institutes of Health. Almost 150 members of the medical school faculty are listed in Best Doctors in America.
Ontario Autism Coalition Event Notice
Ontario Autism CoalitionEvent Notice
August 22, 2007
The Ontario Autism Coalition is pleased to invite you to the following events as part of our ongoing campaign to raise awareness of Autism Issues.
**************************************
Actions Speak Louder than Announcements
Who: Michael Bryant, Attorney General for Ontario
What: Mr. Bryant’s community BBQ
When: Sunday, August 26, 2007 from 1:30 to 3:30 p.m.
Where: Wells Hill Park (near the St. Clair West subway station on the south side of St. Clair, one block east of Bathurst)
Why: The Attorney General for the Ontario Liberal Government, Michael Bryant, has spent, and continues to spend millions of taxpayer dollars fighting families of children with autism in the courts while children with autism sit on lengthy waitlists for service. Not only do families of children with autism go into financial hardship paying for services, families are now burdened with additional unnecessary court costs.
The Ontario Autism Coalition (OAC) will be making an appearance at Mr. Bryant’s community BBQ to bring the autism crisis to the attention of Mr. Bryant and his government. The OAC will be joined by members of Toronto Action for Social Change (TASC), a non-violent social justice action group whose members have long sought significant changes in social policies that punish the most vulnerable members of Ontario's society. The OAC invites parents, family members and interested individuals to join them in this worthwhile event.
This event is a preview of what Liberal MPP's can expect as part of an Ontario-wide Day of Action for Autism on Saturday, September 15, 2007.
Contact Laura Kirby-McIntosh, Executive Member of the OAC if you would like additional information on either event.
e-mail: mailto:tosh555@hotmail.com
(cell) 416-315-7939
(home) 905-761-5226
Please feel free to bring your own home made signs, banners, and pictures of your loved ones with autism. This is a child-friendly event, however be advised that the park is close to a busy intersection.
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Autism Day of Action
The Ontario Autism Coalition (OAC) is declaring Saturday, September 15th 2007 as a Day of Action for Autism and is inviting you to join us at one of the several elected MPP riding offices in Ottawa, North Toronto, Toronto, Windsor, Essex, and Sarnia where events will be taking place throughout the day to bring awareness to the autism crisis in Ontario.
The OAC is asking for a commitment from all political parties on the following:
1) Allow IBI instructor therapists currently working within the Autism Intervention Program entry into the school system so that scientifically valid, supervised ABA can be implemented. Children receiving intensive ABA through the Autism Intervention Program and students attending school should receive the same quality of ABA services.
2) Eliminate the waitlist in the Autism Intervention Program and fully fund services for all children with Autism - from the mild to severe end of the Autism Spectrum.
3) Develop a formal credentialing system and a proper training and recruitment system for the implementation of ABA to ensure accountability and capacity within the system.
Let's believe that together we can make the necessary change for appropriate publicly funded autism programs and services in Ontario. Please join us at one of the following locations:
Ottawa: Premier Dalton McGuinty's office
1795 Kilborn Ave
Ottawa ON K1H 6N1
Tel :613-736-9573
Fax :613-736-7374
mailto: mailto:dmcguinty.mpp.co@liberal.ola.or
North Toronto: Greg Sorbara's office (Minister of Finance)
Unit AU8- 140 Woodbridge Ave
Woodbridge ON L4L 4K9
Tel :905-851-0440
Fax :905-851-0210
mailto: mailto:gsorbara.mpp.co@liberal.ola.org
Toronto: Kathleen Wynee's office (Minister of Education)
146 Laird Dr, Suite 101
Toronto ON M4G 3V7
Tel :416-425-6777
Fax :416-425-0350
mailto: mailto:kwynne.mpp.co@liberal.ola.org
Windsor: Sandra Pupatello's office (Min. of Economic Development and Trade)
1483 Ouellette Ave
Windsor ON N8X 1K1
Tel : 519-977-7191
Fax :519-977-7029
mailto: mailto:spupatello.mpp@liberal.ola.org
Essex: Bruce Crozier (Deputy Speaker)
78 Talbot St N
Essex ON N8M 1A2
Tel :519-776-6420
Fax :519-776-5763
mailto: mailto:bcrozier.mpp.co@liberal.ola.org
Sarnia: Caroline DiCocco (Minister of Culture)
4th Floor - 201 Front St. North
Sarnia ON N7T 7T9
Tel :519-337-0051
Fax :519-337-3246
mailto: mailto:cdicocco.mpp.co@liberal.ola.org
Please visit our website, http://www.ontarioautism.com, if you would like to contact an OAC Executive Member for more information.
Facing Autism in New Brunswick 1 Year Later
It is now 1 year, or more accurately, 1 year and 2 days, since I started the Facing Autism in New Brunswick (Canada not New Jersey) blog site. It has been an interesting year. I have kept this site as a moderated site and I am convinced that is the only way for an autism blog site to function. The divisions within the autism "community" are intense and there are several great autism divides. The dialogue while often informative, and occasionally enlightening, often descends into petty bickering between members of entrenched camps some of it offensive. It is necessary to keep some of the more extreme stuff off of this site.For those who don't share my views, and I believe there are 1 or 2 of you out there, you have to blame a fellow named Charles LeBlanc for the existence of this blog site . Charles is a very controversial friend, who has in the past chipped in to help local autism causes and operates New Brunswick's most famous, or most notorious, blog site - Charles LeBlanc Political ADHD Activist. His writing is a bit on the wobbly side but he takes excellent photos. He criticizes a number of public officials, sometimes unfairly, but on his better days Charles will bring public attention to bear on important social issues like the plight of the homeless. He is, at the end of the day, a royal pain in the ......... neck for a lot of public decision makers which is why you have to blame Charles for this autism blog site. You see Charles told me that he regularly gets visitors from the government offices he criticizes. They may not like what he has to say, or how he says it, but they still visit his blog site daily to see what he is saying; a fact confirmed for me by other friends in the public service.
That is the lesson I learned from Charles and his web site and it has proven true with Facing Autism in New Brunswick. If public decision makers will read what you have to say about them publicly on a web site it makes sense to have a web site to advocate for your cause. Being in the public domain they take it more seriously because it is in the public domain that they earn their living.
When I blog about New Brunswick government institutions or politicians, it is common to get a number of visitors from the government site. If education is the issue then Statcounter will invariably show an uptake in visitors with a separate Department of Education signature. I also get "gc" (government of Canada) visitors when posting on federal government issues.
The most startling visit to my web site? I recently received a visit from someone using a Central Intelligence Agency account. Given the political and security mindset in the US since 2001 that sort of jumps out at you, even though it may just be a clerical worker with an autistic child, visiting your site.
My most enjoyable blogging moments have occurred when I found a reasonable, heck any, excuse to post pictures and comments about my son Conor. And the kind remarks that some have offered about my buddy Conor are definitely the highlight of my blogging year on Facing Autism in New Brunswick.
I thank everyone who has taken the time out of their day to visit this site during the past year.
My Autism Blog Motivation
Conor and Dad having a good laugh watching Pontoffel Pock on Youtube.
Shower hair? No big deal.
Stimming with a dandelion stem.
Conor, sensitive to noise, reacts to the loud sounds of a passing motorcycle.
All smiles at the mall, Conor is about to get a favorite treat - a gum ball.
Tuesday, August 21, 2007
Autism Disorder Deficits - Resistance to Change
While hundreds of thousands of parents in the real world seek treatment for their autistic children, mortgaging their homes, taking on second jobs, fighting and struggling with service providers, there are many internet commentators, including some parents, who do not view autism as a disorder. Adherents to this ideology view autism as just a reflection of different personalities or neurological diversities.
According to this view, called neurodiversity by some, autism is groovy. Just breathe easy they say, relax, find the joy in your child's autism and with time things will improve. Your child doesn't talk or communicate in any way? Don't worry. If you just let up, stop abusing your child with ABA, and say nice things about autism your child will spontaneously recover some day, if you just let it happen. Let it be man, let it be.
Most parents, struggling to help their children, and dealing with the realities of living with, loving, and caring for autistic children know better. They know that autism is a serious disorder which impairs the life prospects of their children, a disorder which manifests itself in serious deficits. One of those deficits can be an extreme resistance to change. In Resistant to Change the Chicago Sun-Times tells the story of Matthew Buck and his family and how Matthew's autism, and his extreme insistence on routine affects their lives, from their daily lives to Matthew's inability to attend uncle's wedding reception because it would have been too upsetting to interrupt his daily routine.
Resistant to Change also highlights a study being done at the University of Illinois at Chicago, which recently won a $9.6 million federal grant to study causes and possible treatments of insistence on sameness.
UIC researchers will study genetics, brain chemistry, brain functions, etc., that might explain insistence on sameness.
...
According to this view, called neurodiversity by some, autism is groovy. Just breathe easy they say, relax, find the joy in your child's autism and with time things will improve. Your child doesn't talk or communicate in any way? Don't worry. If you just let up, stop abusing your child with ABA, and say nice things about autism your child will spontaneously recover some day, if you just let it happen. Let it be man, let it be.
Most parents, struggling to help their children, and dealing with the realities of living with, loving, and caring for autistic children know better. They know that autism is a serious disorder which impairs the life prospects of their children, a disorder which manifests itself in serious deficits. One of those deficits can be an extreme resistance to change. In Resistant to Change the Chicago Sun-Times tells the story of Matthew Buck and his family and how Matthew's autism, and his extreme insistence on routine affects their lives, from their daily lives to Matthew's inability to attend uncle's wedding reception because it would have been too upsetting to interrupt his daily routine.
Resistant to Change also highlights a study being done at the University of Illinois at Chicago, which recently won a $9.6 million federal grant to study causes and possible treatments of insistence on sameness.
UIC researchers will study genetics, brain chemistry, brain functions, etc., that might explain insistence on sameness.
...
Insistence on sameness is a classic sign of autism. A child might, for example, line up his toys in an unchanging order, or want to always take the same route home.
About 20 percent of autistics have extreme forms of the behavior. Interrupting their routines can trigger temper tantrums, hitting and biting. It's one of the most "troublesome and debilitating" characteristics of autism, said Dr. Edwin Cook, director of the UIC Autism Center of Excellence. And it's one of the main reasons some autistics must be institutionalized, he said.
Autism Treatments - Only Behavioral Intervention Is Proven Effective
James Mulick, and several graduate psychology students, presented a symposium on “Outrageous Developmental Disabilities Treatments” Aug. 20 in San Francisco at the annual meeting of the American Psychological Association. The focus of the symposium was the multitude of fad treatments, some of them dangerous, which have accompanied the explosive growth in numbers of autism diagnoses. Ineffective or unproven treatments like special diets or nutritional supplements, Megadoses of Vitamins C and B6, and supplements with fatty acids like omega-3s were discussed. Chelation therapy, the medicinal removal of substances such as mercury from the body, was identified as being not only unproven, but also dangerous and potentially deadly. The conference also mentioned the one proven treatment to date - early intensive behavioral intervention:
While other treatments are still being investigated, right now the only therapy that has been shown to have a long-term positive affect on autism is called Early Intensive Behavioral Intervention, Mulick said.
EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.
“It’s expensive and difficult for many parents to use,” Mulick said. “That’s got to be one reason other treatments look attractive to them.”
Mulick said other treatments and therapies are being studied. However, it takes years to test treatments for autism because of the nature of the disease and problems with proving effectiveness.
“Autism studies are a long, time-consuming, and expensive process,” Mulick said. “And some of the fad treatments being used today would never be approved for testing – they are just too dangerous.”
Monday, August 20, 2007
Autism, Aversives and the Rotenberg School of Shock
In Experts on Self-Injurious Kids Challenge Dr. Israel's Methods Mother Jones looks at the Judge Rotenberg Center's continued use of electric shocks as a means of treating self injurious behavior in children with developmental disabilities and/or "problem" behavior in its historical context noting that when its use began decades ago there were few alternatives other than physical restraints and medication to treat patients with serious self injurious behaviors. Dr. Gina Green, Dr. Brian A. Iwata and Dr. Paul Touchette comment on the abandonment, decades ago, of aversive therapies in favor of functional analysis and positive reinforcement. But Dr. Matt Israel at the Judge Rotenberg Centre continues to use electric shock and other aversives and does so for a wide range of "problem" behavior. The Center's claim to do so in conjunction with the use of functional analysis was reviewed, at Mother Jone's request, by Dr. Iwata who after reviewing the Center's description of its functional analysis techniques stated:
""The procedures described do not amount to any type of functional analysis or functional assessment," Iwata concluded. Israel's "across-the-board rejection of the technology seems unusual for a program claiming to provide state-of-the-art services. In the case of [the Rotenberg Center], it seems that refinements in technology have been selective: The technology of punishment is unlike that used in any other program, whereas other technologies have been left behind."
This article is one of several by Mother Jones in a feature titled School of Shock an examination of the Rotenberg Center, its use of shock therapies for autism and "teen problem behavior", the inadequacy of its reporting, uncertified instructors, and its aggressive solicitation of business. Problem behavior can mean trivial matters such as profanity and dress code violations and can result in youths being strapped to restraint boards or chairs for hours or, or intermittently for days.
Reading School of Shock creates a sense of being caught in a time warp, of being transported to a time prior to the movie adaptation of Ken Kesey's 1962 novel "One Flew Over the Cuckoo's Nest". It is disconcerting to realize that such practices are permitted to continue in the United States today.
""The procedures described do not amount to any type of functional analysis or functional assessment," Iwata concluded. Israel's "across-the-board rejection of the technology seems unusual for a program claiming to provide state-of-the-art services. In the case of [the Rotenberg Center], it seems that refinements in technology have been selective: The technology of punishment is unlike that used in any other program, whereas other technologies have been left behind."
This article is one of several by Mother Jones in a feature titled School of Shock an examination of the Rotenberg Center, its use of shock therapies for autism and "teen problem behavior", the inadequacy of its reporting, uncertified instructors, and its aggressive solicitation of business. Problem behavior can mean trivial matters such as profanity and dress code violations and can result in youths being strapped to restraint boards or chairs for hours or, or intermittently for days.
Reading School of Shock creates a sense of being caught in a time warp, of being transported to a time prior to the movie adaptation of Ken Kesey's 1962 novel "One Flew Over the Cuckoo's Nest". It is disconcerting to realize that such practices are permitted to continue in the United States today.
Sunday, August 19, 2007
Autistic Woman Beaten By Attendants in Group Home
As a human being the atrocities committed against a low functioning autistic woman by employees in a New York group home are sickening.
It is difficult to imagine that there are such disgusting excuses for human beings walking this planet and that they are able to find employment in a group home with vulnerable residents.
As a father of a low functioning autistic boy whose future will include some level of institutional care it is terrifying to read what these thugs did to this helpless woman.
This poor soul could not speak for herself. And the animals who savaged her knew it. Perhaps video cameras in all areas of institutions with non communicative residents should be mandatory. So that the videos can speak for them when they are subject to abuse.
Newsday, Auust 18, 2007
An autistic resident of a Long Island group home was beaten with a shoe and a wooden coat hanger, slapped in the head and kicked by several employees whose vicious assaults were captured by a hidden video camera, Nassau County police said.
The helpless 50-year-old victim was battered repeatedly at the PLUS Group Home Inc. by at least four employees after one of their co-workers alerted police to possible mistreatment of the residents inside the Uniondale facility, police said.
Group home management then installed the camera inside air conditioning vents at the home, according to Terri Cancilla, executive director of the PLUS Group Home Inc.
...
Authorities said the victim can not speak or convey emotions or pain because of her disease, which is characterized by impaired social interaction.
It is difficult to imagine that there are such disgusting excuses for human beings walking this planet and that they are able to find employment in a group home with vulnerable residents.
As a father of a low functioning autistic boy whose future will include some level of institutional care it is terrifying to read what these thugs did to this helpless woman.
This poor soul could not speak for herself. And the animals who savaged her knew it. Perhaps video cameras in all areas of institutions with non communicative residents should be mandatory. So that the videos can speak for them when they are subject to abuse.
Newsday, Auust 18, 2007
An autistic resident of a Long Island group home was beaten with a shoe and a wooden coat hanger, slapped in the head and kicked by several employees whose vicious assaults were captured by a hidden video camera, Nassau County police said.
The helpless 50-year-old victim was battered repeatedly at the PLUS Group Home Inc. by at least four employees after one of their co-workers alerted police to possible mistreatment of the residents inside the Uniondale facility, police said.
Group home management then installed the camera inside air conditioning vents at the home, according to Terri Cancilla, executive director of the PLUS Group Home Inc.
...
Authorities said the victim can not speak or convey emotions or pain because of her disease, which is characterized by impaired social interaction.
Saturday, August 18, 2007
Patrick Dempsey Driving Autism Speaks No. 29 Car at Grand Prix de Trois-Rivières
UPDATE: Aug 19 TROIS-RIVIÈRES, Que. (Aug. 19, 2007) - Starting on pole and leading all 29 laps, Jason Saini, of Fort Worth, Texas, not only won Round Seven of the SCCA Pro Racing SIRIUS Satellite Radio Mazda MX-5 Cup at the Grand Prix de Trois-Rivièrs, but also clinched the 2007 MX-5 Cup Championship. ......
Actor and Grey's Anatomy star Patrick Dempsey just missed the top-ten, finishing 11th after starting 16th in the No. 29 AutismSpeaks.org/TeamMER MX-5.
TheRaceSite.com
In yet another autism awareness coup pulled off by Autism Speaks, Grey's Anatomy star Patrick Dempsey will be racing the Autism No. 9 car at the Grand Prix de Trois-Rivières Sunday in Round Seven of the SCCA Pro Racing SIRIUS Satellite Radio Mazda MX-5 Cup.
SPEEDTV.com
For Sunday’s 45-minute MX-5 Cup race, Dempsey will step behind the wheel of the No. 29 AutismSpeaks.org/Team MER MX-5. As a parent of three children, the mission of Autism awareness is easy for Dempsey to identify with.
“We’re seeing more cases of Autism being diagnosed and we don’t know where it’s coming from or why it’s happening, especially more in boys. I have two young sons and it’s certainly a concern of mine. I think for anyone who’s a parent and anyone who has to go through this, it’s a difficult thing, but there’s a lot of help out there now that wasn’t there before. The big thing is to be aware and watch your newborn, talk to your doctor and educate yourself about it. That’s why it’s great to be a part of Autism Speaks.”
“We’re really happy that Patrick has agreed to drive the Autism Speaks car,” Team MER representative Marc Miller said. “Ever since my son was diagnosed it’s been a passion of mine. Thankfully with the support of the team we can provide some exposure to the organization and what they’re doing and having Patrick driving the car is an added boost to the whole program.”
NOTE: Information on the MX-5 Cup can be found at SCCA Pro Racing SIRIUS Satellite Radio Mazda MX-5 Cup
Missing Autistic Boy Found in Pennsylvania
Sometimes it ends well, thankfully.
http://www.mcall.com/news/local/all-4lostboy-2.6002558aug18,0,3187077.story
http://www.mcall.com/news/local/all-4lostboy-2.6002558aug18,0,3187077.story
Missing autistic boy, 11, found
Half-day search ends near Catasauqua High. He gets medical exam.
An 11-year-old autistic boy who had been missing for 13 hours was found early today at Catasauqua Area High School and was getting a medical checkup. At least eight fire companies and police departments sent personnel for the half-day search, which totaled nearly 100 people. Boats and divers combed the river south to Allentown, while searchers on all-terrain vehicles checked the shore, Northampton Police Chief Laird Brownmiller said. The boy was found at 12:12 a.m. today at the high school in Allen Township, said a supervisor at the Northampton County 911 center. Further details were unavailable.Autistic Boy Lost in Pennsylvania
In Pennsylvania, Justin Menezes, an 11 year old non verbal autistic boy with limited understanding of danger, was still missing at 11 pm Friday evening, 12 hours after he wandered off. Justin had been in a park with a group being watched by Access Services of Bethlehem, which provides services to children and adults with developmental disabilities. Justin's mother, Margot Menezes, said he doesn't know danger, doesn't know right from wrong. His father Christopher Menezes, said Justin's autism makes him especially vulnerable.
''He probably could run in front of a car without even thinking,'' said Menezes, 43. ''You have to watch him all the time.'' He said his son can't swim but is attracted to water."
http://www.mcall.com/news/local/police/all-b4_4lostboy.6002334aug18,0,7182571.story
Hopefully Justin will be found and returned to his family - safe and sound.
Friday, August 17, 2007
Ontario Autism Coalition Rejects McGuinty's Autism Half Measures
In Ontario the Dalton McGuinty Liberal government has announced a raft of measures, on the eve of Ontario election 2007, to address the needs of autistic children in Ontario.
The Ontario Autism Coalition has responded pointing out a number of deficiencies in the announced plan - including wait times for autistic children to receive treatment measured in years rather than weeks.
In addition education policies which effectively prevent Intensive Behavioral Intervention from being used in public schools are also condemned. The OAC describes the announced plan as little more than half measures and partial solutions. Meanwhile, Autism Ontario which receives $1.5million under the plan, to provide respite services, including a web site, gave the announcement a very positive review.
The Ontario government Press Release:
McGuinty Government Investing In More Services For Children And Youth With Autism
Increasing The Number Of Children Receiving IBI, Providing Relief
Services For Thousands Of Families
TORONTO, Aug. 17 /CNW/ - The McGuinty government is investing more than
$12 million this year to provide Intensive Behaviour Intervention treatment
for 210 more children and youth with autism, bringing the total number of
children receiving the specialized care to approximately 1,400 - a 160 per
cent increase since 2004, Minister of Children and Youth Services Mary Anne
Chambers announced today.
"Our government has been taking steps to increase the capacity of the
sector by training and recruiting more therapists for kids with autism," said
Chambers. "As a result of our capacity building efforts more children with
autism will have access to Intensive Behaviour Intervention therapy and more
families will have access to much needed respite services."
With the government's policy of not discharging kids from the Intensive
Behaviour Intervention program on the basis of age, the resulting increased
demand is being addressed by building a continuum of service for children and
youth with autism and their families and by more than tripling annual support
since 2003-04 to more than $140 million in 2007-08.
In addition to taking 210 children off IBI wait lists, the $12 million in
additional funding announced today will be used to hire more IBI therapists
and provide temporary relief services to more than 3,000 families across the
province.
"I am very pleased that over 200 additional IBI spots have been funded
while children over age 6 continue to remain in this program," said Tammy
Starr, a parent of a child with autism. "I have confidence that Minister
Chambers and her ministry will ensure that families will be able to access
these services quickly and that children will be receiving high quality
treatment."
"Autism Ontario is encouraged to see this additional investment in
support of children and families with autism. Respite services are so vitally
important for families dealing with the day to day challenges of autism and
Autism Ontario is pleased to have the opportunity to work with the Government
and parents to further understand and deliver respite options that meet the
unique needs of families from communities across the province," said Deborah
Kitchen, President of Autism Ontario.
"We have listened and learned from families, service providers and
specialists, that our efforts to provide supports and services for children
and youth with autism spectrum disorders need to consider the incredible
demands placed on families involved," said Chambers. "I have seen the enormous
benefits that our government's support for respite services, including summer
camps, provides for both parents and children alike."
Other ways the government is working together with community partners to
support children and youth with autism include:
- No longer discharging children from the Autism Intervention Program
on the basis of age and assessing all children referred to the program,
regardless of age
- Creating the Ontario College Graduate Certificate Program
in Autism and Behavioural Science and increasing the number of qualified
professionals graduating from the program to at least 220 by 2008-09;
the program is being expanded to include three more colleges, bringing the
total number of colleges participating to 12 across the province, effective
September 2007. More than 200 trained therapists have graduated from the program
province wide since 2006
- Hiring nearly 300 new therapists since 2004
- Reducing the number of children waiting for assessment for the Autism
Intervention Program by 752 or 69 per cent since 2004
- Through the Geneva Centre for Autism, training up to 1,600 resource staff in the child care sector
and child care workers and 5,000 educational assistants who work with children
with autism
- Providing nearly $6 million in further investments to support school
boards in providing Applied Behaviour Analysis for students who need it beginning
in the 2007-08 school year
- Investing $530,000 in summer 2007 to help send more than 800 children and youth
with autism to supportive camp environments
- Providing $900,000 over three years to expand www.respiteservices.com, a
centralized website operated by the Geneva Centre for Autism. Effective September
2007, the site will link 35 communities across the province, providing information
on relief services to families caring for an individual with a disability,
including autism
The Ontario Autism Coalition recognizes that 210 new program spaces and
funding for respite is most welcome, but the OAC is still concerned
about the growth in the wait list and the lack of IBI in schools.
Increases in funding?including today?s announcement?have barely kept
pace with the growth in the wait list. The Minister says that as of July
2007, there were 1,082 children waiting for IBI, up from 985 in the fall
of 2006. This was despite Minister Chambers? last announcement of 225
new spaces in January of 2007. More information about growth in the
wait list can be found at http://www.soaringhorse.com.
The bottom line: wait times for children with autism are still measured
in years, not weeks.
The OAC has repeatedly pointed out that the wait list could be eliminated
if money was targeted through direct funding to families and if the
Ministry of Education would allow special education funding to be used
for IBI in schools. This is done is many other jurisdictions across
North America.
The need for the Ministry of Education to step up to help children with
autism in schools is clear. 60% of children currently on the IBI
wait list are of school age, as are 45% of the children on the wait list.
Minister of Education Kathleen Wynne announced in March 2007, that ABA
would be introduced in Ontario schools, 3 ½ years after Premier Dalton
McGuinty promised to do so. But she also indicated that the intensity
that is so important for children with autism would not be required, and
that not all school boards would be prepared for September 2007.
Students in Ontario are able to access many accommodations for
education, such as speech therapy, occupational therapy. Children with
autism are specifically prevented from accessing IBI, the
best-researched, most effective method of teaching, in a memo from
Deputy Minister of Education Ben Levin issued in March, 2007 (The memo
can be read at http://www.ontarioautism.com/Documents.html). IBI
instructor therapists are still barred from entering the schools to
support children with Autism.
Families touched by autism do not need half measures and partial
solutions. We need a wholehearted embrace of the best teaching methods
for children with autism.
Celebrity Autism Advocates Roberta Flack and ...... Lisa Fischer!
The power of celebrities to command attention can be annoying when the media focuses on the trials and tribulations of their human foibles. It can also be amazing when celebrities step forward and contribute the power of their celebrity status, and their talents, to a worthwhile cause - a fact recognized and used by Bob and Suzanne Wright and Autism Speaks to advance autism awareness and research to new heights.
In Canada Eugene Levy spoke out to advance the cause of autism and when he did the media, and Canada, listened. I appreciate it each time I learn of celebrities using their power to raise awareness, or help provide services or fund research for autism. Stamfordplus.com has a notice of a benefit for autism scheduled for Saturday, September 22, 2007 - 8 p.m. at the Palace Theatre, Stamford, CT. The event will benefit Stamford Education 4 Autism and features the incredible Roberta Flack and a lengthy list of very talented musicians. From that list I would like to highlight one other name in particular ................... Lisa Fischer.
I am not a music expert. And I have no musical ability. On my report card in elementary school my music teacher, who was a different sort of personality to begin with, would make brutal,but truthful, comments like "Harold, well, what can I say about Harold" or "Harold couldn't carry a tune in a bucket". All of which was, and remains, true. When a local autism group, FACE, (Family Autism Centre for Education), held a benefit dinner at CFB Gagetown a few years ago one of our members was feeling tired at the end of the evening and took a brief nap while seated in one of the cubicles in the Men's washroom. I am a fairly big guy and I was asked if I could get our friend out of the locked cubicle. The logistics of that exercise and the potentially embarrassing consequences of trying to crawl under the cubicle door to help the guy out were too scary too contemplate. But I used my total lack of musical ability to advantage. I began singing "Danny Boy" to the best my monotone voice could muster and our friend immediately woke up, got up and left the cubicle with every one's dignity intact. Despite my own lack of musical ability or knowledge though I love listening to music - country, rock, pop, classical, folk, jazz, blues. And when the Rolling Stones brought their Bigger Bang tour to Moncton New Brunswick in September, 2005, I was there. And that is where I also experienced the incredible voice of Lisa Fischer.
I was in awe when I saw the Stones, especially Jagger and Richards on stage. The show was the most incredible entertainment experience of my life. The Stones were amazing as were the opening acts which included, amongst others, the Tragically Hip. But the one performer who stole the show, momentarily at least, from the Stones was lead backup singer Lisa Fischer who sang a tribute to the great Ray Charles which absolutely knocked me out. Reviews of the concert mentioned Jagger and Lisa Fischer singing a duet on the tribute song "The Night Time is the Right Time" but I don't remember Jagger on that number. All I remember from that number is the incredible voice of Lisa Fischer.
I didn't know at that time who Lisa Fischer was but I now know she has been a "backup" singer with the Stones for more than 17 years, has performed with Tina Turner and is a Grammy Award winning performer in her own right. If you have the opportunity to attend the Stamford Education 4 Autism benefit on September 22 I highly recommend you do so - to benefit autism - and to enjoy an evening of entertainment led by Roberta Flack and, if you don't already know about her, the amazing voice of Lisa Fischer. I don't blame you if you don't want to take Mr. "couldn't carry a tune in a bucket"'s personal assessment of Ms Fischer's talent but I can refer you to another somewhat more credible judge of music - Rolling Stone.com (Jon Marko) commenting on the opening show of the Bigger Bang tour in Boston:
http://www.rollingstone.com/news/story/7581198/stones_open_with_a_bang
Stones Open With a Bang
Midway through the set, Jagger introduced a number by "someone who's music we used to cover when we were just starting out" and then launched into Ray Charles' "Night Time Is the Right Time." The Stones, with support from assembled support players on keyboards, horns and backing vocals, captured the spirit of Charles' signature blend of jazz, R&B, and gospel styles -- including Jagger's standout vocal duet with Lisa Fischer, whose bluesy wailings spurred the crowd to its largest reaction of the evening.Thursday, August 16, 2007
Autism, Toxic Toys and Health Minister Tony "Be Fair to Me" Clement
The contempt of the Harper government, and its Health Minister Tony Clement, for Canadians with autism was made clear by its national autism strategy farce. The strategy would be a joke if the subject matter were not serious. The sum total of the Harper-Clement national autism strategy is a less than mediocre one page web site and a cancelled national stakeholders symposium.
Now, with his government facing criticism for its failure to protect Canadian children from the harmful effect of lead in toys, Minister Clement can do no more than blame the previous government, talk about a "review" of the issue that he has ordered, and plead for fairness - for him:
""To be fair to me, I ordered this review before the latest recall," Clement said. "It would have been nice if the Hazardous Products Act was reviewed by a former government – and they had acted on it five or 10 years ago. But this is the reality we find ourselves in.""
http://www.thestar.com/News/article/246853
For the record the Harper government has been in office since January 2006. On autism Health Minister Clement has a one page web site to show. On protection of all Canadian Children he has ordered a review of lead in toys. A review. Wow.
Be fair to you Minister Clement? Be fair to YOU?
Try being fair to Canadian children and Canadians with autism.
Autism Advocacy - Parents Lead the Fight for Autism Services
Here in New Brunswick it is parents who have led the fight for autism services. That fight began many years ago. In November 2001 a government report often referred to as "the IDC Report" , almost two years after the inter departmental committee was struck which issued the report, concluded that there was very little in the way of autism specific services offered by the Province of New Brunswick. That has changed significantly but much remains to be done. The changes that were made included some pre-school funding, proper training of autism intervention workers at the UNB-CEL Autism Intervention Training program, and the first stages of training of teachers aides and resource teachers at the UNB-CEL AIT program. Huge challenges remain in all areas and especially in the areas of youth and adult residential care, employment opportunities and quality of life. But none of the positive changes that have been made here in New Brunswick would have taken place without intense parental advocacy.
Parents of autistic children also lead the charge for better services elsewhere. FEAT organizations and similar parent driven groups have led the fight in other jurisdiction in North America. In Ontario the Ontario Autism Coalition is preparing to insert autism issues into the impending election in that province. South Carolina saw an incredible effort led by three determined mothers who wrote a bill requiring greater autism coverage and lobbied to get it through the SC legislature even overriding the South Carolina Governor Mark Sanford's veto. The law takes effect July 1, 2008,
http://www.npr.org/templates/story/story.php?storyId=12829221
Parents of autistic children also lead the charge for better services elsewhere. FEAT organizations and similar parent driven groups have led the fight in other jurisdiction in North America. In Ontario the Ontario Autism Coalition is preparing to insert autism issues into the impending election in that province. South Carolina saw an incredible effort led by three determined mothers who wrote a bill requiring greater autism coverage and lobbied to get it through the SC legislature even overriding the South Carolina Governor Mark Sanford's veto. The law takes effect July 1, 2008,
http://www.npr.org/templates/story/story.php?storyId=12829221
Morning Edition, August 16, 2007 · Coverage for the therapies and treatment associated with autism is limited in most states. But a growing number of states are mandating more complete coverage for this condition.
South Carolina just passed a law requiring greater coverage. Three mothers of autistic children joined together to write the bill and push it through the legislature, over the governor's veto.
Wednesday, August 15, 2007
Autism and Adulthood
Parents of autistic children, particularly lower functioning autistic children, often fear that ultimate autism reality check. Their child is now an adult. What do they do now? Parents grow older and become more feeble. The child is now a robust adult. But sometimes lacking in understanding of the world and lacking the ability to function fully. As the family's ability to care for the now grown child diminishes, all the tests that Dr. Laurent Mottron comes up with to demonstrate the innate intelligence of autistic persons will not help the family as it wrestles with real life issues such as where their child will live, how will he be cared for, and by whom, and what quality of life will she enjoy or endure as the case may be. Services are generally not readily available as the school system is left behind. Internet autism divas and gurus will be dispensing their wisdom on the internet but they will not be there to help your child. In Parents of older autistic children wonder: Now what? Quincy Herald Whig, August 15, 2007, the Cawthon family faces the reality of adult autism and the future for their 21 year old son Nick.
http://www.whig.com/332192695708984.php
"Come school time, it's going to freak him out not to go somewhere every day," she said.
http://www.whig.com/332192695708984.php
Parents of older autistic children wonder: Now what?
"Come school time, it's going to freak him out not to go somewhere every day," she said. Nick, who speaks very little, told his mom that Friday night, "want to go to school."
She reminded him that he graduated.
"Want to go to CRC," he said, shifting his weight from leg to leg, then moments later repeated, "Want to go to CRC."
For now, that's not going to happen.
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